This month, the UK Health Data Research Alliance (the ‘Alliance’) received a set of recommendations from Health Data Research UK’s (HDR UK) Public Advisory Board (PAB) on how public and patient understanding of, and involvement in, data governance procedures should be improved to develop and maintain public trust in the use of health data for research. This followed a survey of Alliance members to understand the extent to which the public and patients are involved in data access governance processes (including data access committees and decision-making systems).
The Alliance welcomes this paper ‘Building trust in data access through public involvement in governance’ – HDR UK Public Advisory Board and is grateful for the Public Advisory Board’s leadership in highlighting the importance of public involvement in data access processes and the gaps we have across organisations.
While there are examples of good practice of involving patients and the public in robust data governance procedures across the Alliance, and improvements are taking place, we acknowledge that there is far more that can be done. There are improvements to be made in ensuring that data access committees have active and meaningful public or patient involvement, and in providing more transparent and accessible information about data access procedures and approved data uses to improve public awareness and understanding. There is also a need to bring the research and clinical communities together with patients and the public, to be guided on what is considered responsible and trustworthy sharing and linkage of health data for research and innovation. These steps will help to demonstrate trustworthiness and build the confidence of patients and the public so that we can continue to use health data for research to improve people’s lives.
The recommendations set out by the Public Advisory Board align with the National Data Guardian’s ‘Putting Good into Practice: evaluating public benefit when health and adult social care data is used for purposes beyond individual care’ and provide a clear direction for the Alliance to work towards improving public involvement and transparency of data access processes. The recommendations are also aligned to our Principles for Participation that all members are signed up to.
As a collective of 53 national health and research institutes, the Alliance Board supports the implementation of these recommendations. A dedicated working group will be established, including representation from the Public Advisory Board, public contributors who sit on data access committees and data access committee chairs, to plan short-term and long-term goals, through shared learning, and the Alliance will report back on progress.
The Alliance requests that a follow-up survey is conducted in February 2022 to monitor progress.